I’ve not been sleeping well this weekend. Vince’s party kept me up late on Friday night. Saturday I had to get up at 5 am to go to clinical which lasted until 5 pm. Then I went out to dinner with a new Rett mom. Those dinners are tough because I gotta go back in time (exactly 10 years now) and remember how terrible the beginning years were to re-understand what to say her. And I see in this other woman I don’t know physically embody my intangible memory of who I was then. This did not lead to a peaceful night’s sleep.
I’ve been having trouble finding books to read, but I’ve settled on “A Little Life”. I told Jeremy that it was beautifully written and he said – what’s it about? – and I answered – oh, uh, child sexual/physical abuse. (Jeremy’s like – why Doris, why? what’s with depressing stories? … oh well.) One of the central characters in the story has a typically developing child who is diagnosed with an incurable, progressive neurodegenerative disease at age 4 and dies about a year later…
“I admired how she knew, well before I did, that the point of a child is not what you hope he will accomplish in your name but the pleasure that he will bring you, whatever form it comes in, even it if is a form that is barely recognizable as pleasure at all – and, more important, the pleasure you will be privileged to bring him. For the rest of Jacob’s life, I lagged one step behind Lisel: I kept dreaming he would get better, that he would return to what he had been; she, however, thought only about the life he could have given the current realities of his situation. Maybe he could go to a special school. Okay, he couldn’t go to school at all, but maybe he could be in a playgroup. Okay, he wouldn’t be able to be in a playgroup, but maybe he would be able to live a long life anyway. Okay, he wouldn’t live a long life, but maybe he could live a short happy life. Okay, he couldn’t live a short happy life, but maybe he could live a short life with dignity: we could give him that, and she would hope for nothing else for him.”